Does Public Disability History Need a Cultural Model of Disability?

by Anne Waldschmidt, University of Cologne

Until today, efforts to develop a cultural model of disability have been rare. However, in parallel with the development of the social model and its critical discussion and partly independent of it, during the past decades we have witnessed an increase in cultural studies with regard to disability. We can already identify cultural disability studies as an innovative and prolific research field carried out in the humanities (see for example Waldschmidt et al. 2017). Yet, it is striking that in contrast to the social model of disability, which is often accused of dogmatism, the field of cultural disability studies still looks more like a patchwork quilt. The latter has not yet found to unique contours, despite an ongoing discussion on the implications of culture for disability constructions.

The National Gallery architecture and Alison Lapper sculpture at Trafalgar Square, London, UK. Ph: CGP Grey
As early as 1994, Tom Shakespeare called for a stronger perception of cultural representations of disabled people. Inspired by feminist debates and discussing different theories, he suggested "that disabled people are 'objectified' by cultural representations" (287), under which he subsumed theatre, literature, paintings, films and the media. In the following years, prominent scholars in the Anglo-Saxon world such as Lennard J. Davis, Rosemarie Garland-Thomson, Robert McRuer, David T. Mitchell and Sharon L. Snyder, Margrit Shildrick, Tobin Siebers, Shelley Tremain and others, published a great variety of cultural and literary analyses showing the wealth and productivity of treating "disability as a cultural trope" (Garland-Thomson 2002: 2). In 2006, Snyder and Mitchell explicitly introduced a "cultural model of disability," but they defined it narrowly as an approach that was primarily associated with US-American Disability Studies. In introducing the phrase "cultural locations of disability," referring to "sites of violence, restriction, confinement, and absence of liberty for people with disabilities" (Snyder and Mitchell 2006: x), they offered a tool for interdisciplinary works on disability within and beyond cultural studies.

Additionally, some scholars have argued for the usefulness of a cultural model of disability to study intersections between migration, ethnicity, 'race' and disability. In 2005 Patrick J. Devlieger, who teaches cultural anthropology in Leuven (Belgium), pleaded, following Foucault, Derrida and Marx, and focussing on communication and cultural diversity, for a dialectical cultural model (see also Devlieger et al. 2016). Recent works in postcolonial studies ask the question "of how disability is figured in the global, postcolonial history of the modern" and aim "to highlight specific located examples of disability in cultural contexts" (Barker and Murray 2003: 65). Meanwhile, the cultural model of disability has also been acknowledged in religious studies as a 'key term.' In this context, Nyasha Junior and Jeremy Schipper (2013: 35) define it as an approach that analyses "how a culture's representations and discussions of disability (and nondisability or able-bodiedness) help to articulate a range of values, ideals, or expectations that are important to that culture's organization and identity." Disability History, however, has not yet witnessed the development of a cultural model of disability that takes into account the intersections of culture, history and society, although there are attempts that aim at conceptualising this field of research with respect to cultural studies (see Bösl et al. 2010; Barsch et al. 2013).

Generally speaking, we can state that there is an ongoing reflection on the strengths of a cultural approach to disability. At the same time, however, the respective 'model' still seems to have rather blurred features. Further, the debate tends to reproduce the dominance of English speaking disability studies and overlooks contributions from other countries, such as the longstanding works of French philosopher Henri-Jacques Stiker. With regard to Germany, both the interdisciplinary book series "Disability Studies," published since 2007 by Transcript, and the Edinburgh German Yearbook's fourth volume on disability in German literature, film, and theatre from 2010 show a great wealth of works drawing on a cultural studies approach. The editors of the yearbook, Eleoma Joshua and Michael Schillmeier (2010), define the cultural model as "the analysis of the representations of disabled people in the cultural spaces of art, media, and literature" (5) and even speak of a "cultural turn" in disability studies (4).

It is beyond the scope of this essay to discuss these different proposals extensively. Instead, I want to sketch my own approach. Based on contributions published in 2005 and 2012, the latter together with Werner Schneider, I develop a cultural model of disability for the purpose of providing a joint framework for the already numerously existing contributions that analyse disability with the help of methodologies and approaches originating from cultural studies (see also Waldschmidt 2017). My intention is not to suggest that a cultural model should replace the social model of disability. Rather, critical disability studies, including disability history, should acknowledge that disability is both socially and culturally constructed.

What is the core of a cultural model of disability? My main point is that such a cultural model needs to reflect first of all its own understanding of culture. As both a social practice and an analytical category, culture does not only imply cultural activities in the narrow sense, be it so-called high culture or popular culture. Instead, for innovative research it is much more productive to apply a broad conception of culture that denotes the totality of 'things' created and employed by a particular people or a society at a given time in history, be they material or immaterial: objects and instruments, institutions and organisations, ideas and knowledge, symbols and values, meanings and interpretations, narratives and histories, traditions, rituals and customs, social behaviour, attitudes and identities. In this sense the public sphere, be it the public opinion, the public interest, public awareness or any other form of 'res publica,' is ultimately part of the culture of a given society. Hence, if we are going public, for example, in the streets or via social media, we are 'doing culture' in some way or other.In my opinion, if we were to use such a general understanding of culture, a cultural model of disability would not be dismissed as focalising only symbols and meanings, but could broaden our analytical perspective to investigate the relations between symbolic (knowledge) systems, categorization and institutionalisation processes, material artefacts, practices and 'ways of doing things,' and their consequences for persons with and without disabilities, their social positions, relations and ways of subjectivation. Thus, such a cultural disability model differs from other approaches in important aspects: It considers disability neither – as in the individualistic-reductionist model of disability – only as an individual fate nor – as in the social model – as merely an effect of discrimination and exclusion. Rather, this model questions the other side of the coin, the commonly unchallenged 'normality,' and investigates how practices of (de-)normalization result in the social category we have come to call 'disability.' The cultural model of disability implies a fundamental change of the epistemological perspective, since it does not deal with the margin but rather with the 'centre' of society. Against this background, 'doing public disability history' means not only to confront the wider public with disabled persons' perspectives, but to inspire critical self-reflections of those who consider themselves 'non-disabled' and to stimulate a public debate about what it means to be 'normal.'

Recommended Citation:
Anne Waldschmidt (2017): Does Public Disability History Need a Cultural Model of Disability?. In: Public Disability History 2 (2017) 7.

Barker, Clare and Stuart Murray. "Disabling Postcolonialism: Global Disability Cultures and Democratic Criticism." The Disability Studies Reader. Ed. Lennard J. Davis. New York, Milton Park: Routledge, 2013 (4th ed.). 61-73.
Barsch, Sebastian, Anne Klein and Peter Verstraete (eds.) The Imperfect Historian: Disability Histories in Europe. Frankfurt am Main: Peter Lang, 2013.
Bösl, Elsbeth, Anne Klein and Anne Waldschmidt (eds.). Disability History: Konstruktionen von Behinderung in der Geschichte. Eine Einführung. Bielefeld: transcript, 2010.
Devlieger, Patrick J. "Generating a Cultural Model of Disability." Paper presented at the 19th Congress of the European Federation of Associations of Teachers of the Deaf (FEAPDA), October 14-16, 2005. Accessed 02 June 2011 under: <http://feapda.org/Geneva%20Files/culturalmodelofdisability.pdf>.
Devlieger, Patrick, Beatriz Miranda-Galarza, Steven E. Brown and Megan Strickfaden (eds.). Rethinking Disability. World Perspectives in Culture and Society. Antwerp-Appeldorn: Garant, 2016.
Ellis, Katie. Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance. Farnham: Ashgate, 2015.
Garland-Thomson, Rosemarie. "Integrating Disability, Transforming Feminist Theory." Feminist Disability Studies. NWSA Journal 14.3 (2002). 1-32. Accessed 25 Feb. 2013 under: <http://www.jstor.org/stable/4316922>.
Joshua, Eleoma and Michael Schillmeier. "Introduction." Disability in German Literature, Film, and Theater. Edinburgh German Yearbook. Volume 4. Rochester, New York: Camden House, 2010. 1-13.
Junior, Nyasha and Jeremy Schipper. "Disability Studies and the Bible." New Meanings for Ancient Texts: Recent Approaches to Biblical Criticisms and Their Applications. Eds. Steven L. McKenzie and John Kaltner. Westminster: John Knox Press, 2013. 21-37.
Schneider, Werner and Anne Waldschmidt. "Disability Studies: (Nicht-)Behinderung Anders Denken." Kultur. Von den Cultural Studies bis zu den Visual Studies: Eine Einführung. Ed. Stephan Moebius. Bielefeld: transcript, 2012. 128-150.
Shakespeare, Tom. "Cultural Representation of Disabled People: Dustbins for Disavowal?" Disability & Society 9.3 (1994). 283-299.
Snyder, Sharon L. and David T. Mitchell. Cultural Locations of Disability. Chicago: University of Chicago Press, 2006.
Waldschmidt, Anne. "Disability Studies: Individuelles, soziales und/oder kulturelles Modell von Behinderung?" Psychologie & Gesellschaftskritik 29.1. (2005). 9-31.
Waldschmidt, Anne. "Disability Goes Cultural: The Cultural Model of Disability as an Analytical Tool." Culture – Theory – Disability: Encounters between Disability Studies and Cultural Studies. Eds. Anne Waldschmidt, Hanjo Berressem and Moritz Ingwersen. Bielefeld: transcript, 2017. 19-27. Accessed 22 March 2017 under: <http://www.transcript-verlag.de/media/pdf/c3518f77daff835d007919eeac733c3a.pdf>.
Waldschmidt, Anne, Hanjo Berressem and Moritz Ingwersen (eds.). Culture – Theory – Disability: Encounters between Disability Studies and Cultural Studies. Bielefeld: transcript, 2017.
International Research Unit in Disability Studies at the University of Cologne, Germany: http://idis-eng.uni-koeln.de/
Waldschmidt, Anne, Hanjo Berressem and Moritz Ingwersen (eds.). Culture – Theory – Disability: Encounters between Disability Studies and Cultural Studies. Bielefeld: transcript, 2017. ISBN 978-3-8394-2533-6 (open access) https://www.degruyter.com/viewbooktoc/product/430191


How albinism rose to the center stage of disability advocacy in Tanzania (and what this tells us about ‘local’ histories of disability)

by Sam De Schutter, University of Leiden.

In the morning of Saturday 3 December 2016 I arrived at the Mnazi Mmoja park in Dar es Salaam, Tanzania. After walking around for a while, trying to determine where I needed to be, I saw a group of people signing under a banner that said “Maadhimisho ya Siku ya Kimataifa ya Watu Wenye Ulemavu”. That sight told me that I was at the right spot, as I had been invited to join the “Celebration of the International Day of Persons with Disabilities”1. Organized by the Tanzania Federation of Disabled People’s Organizations (SHIVYAWATA), this International Day is used as a tool to gain public attention for the rights of people with disabilities, but also as an opportunity to directly communicate with the government. Apart from musical performances and sketches by a theatre group, most of the day consisted of speeches. These were directed at the government officials that were present. Among them was Tanzanian lawyer Dr. Abdallah Possi, now Deputy State Minister responsible for, among other things, all issues concerning disability. He is the first person with albinism to be appointed as deputy minister, and looking around at the crowd attending the celebrations, he was certainly not the only person with albinism present. Through my fieldwork I came to learn that this strong presence and high visibility of people with albinism is representative of the broader movement of disability advocacy in Tanzania. Through interviews and informal conversations, I started to understand which historical and socio-cultural elements contributed to this.

Deputy Minister Dr. Abdallah Possi at the events for the International Day of Persons with Disabilities in Dar es Salaam, 3 December 2017. (Photograph: Sam De Schutter)
The rights of persons with albinism in Tanzania are defended by the Tanzania Albinism Society (TAS), which was founded in 1978 and officially registered as a society on 29 April 1980. This was the first step of albinism rising to the center stage of disability issues in Tanzania. People with albinism were initially not regarded as disabled. As the current chairman of TAS formulated it in an interview, “they were just people with white skin”. However, the registration procedure to become a recognized association in 1980 demanded that the founders declared the purpose of their organization, and so they decided to register as a Disabled People’s Organization (DPO). This also meant that since then albinism has been regarded as a disability from the perspective of the Tanzanian government.

Although the connection between albinism and disability is of course not unique to Tanzania, much of the explaining of its disabling effects is done in reference to local circumstances. These arguments are rather straightforward: in a country where it is hard to avoid the scorching equatorial sun, having little or no natural protection against UV radiation becomes quite problematic. Moreover, in a society where having a dark skin is considered the norm, people with albinism are extremely visible and as such much more prone to stigmatization. This stigma is linked to what is probably the most prominent concern of organizations like TAS and other advocates for the rights of people with albinism. In Tanzania, as in other parts of Africa, there has been a strong historical link between disability and witchcraft, which has generated some specific beliefs about people with albinism. Different myths and ideas circulate: from regarding the birth of a child with albinism as a curse, over the belief that having sex with a woman with albinism cures AIDS, to the practice of using body parts of people with albinism in rituals to bring wealth and good fortune. This last myth has led to several killings of people with albinism, but also to cutting of limbs or digging up bodies. These events have been extremely mediatized both nationally and internationally, and have put albinism squarely at the center of the advocacy for disability rights in the country. Explaining these events is not only done in reference to local traditions of witchcraft, but also in terms of the rise of capitalism and its emphasis on values such as competition, wealth and success, which allegedly leads to politicians and businessmen seeking resort to these extreme practices. While partly traceable to pre-existing local beliefs, the specific targeting of people with albinism is a rather recent phenomenon. Research in Tanzania’s north-west mining frontier has linked this to an artisanal mining boom, where miners use body parts for profit maximization and protection. This mining boom “is firmly embedded in global commodity and wage labour markets and capitalist profit-optimisation strategies,” where the commodification of body parts is part of a wider process of commodification2.

That brings us to an important argument: as it is tempting to analyze albinism (or disability in general) in Tanzania as a culturally specific historical construct, it is easily forgotten that it is actually a very global history. Linking practices of witchcraft to the history of global capitalism is but one example of this. The history of disability advocacy in Tanzania should also be seen in a transnational framework. The development of TAS from an organization focused on special needs of persons with albinism (sunscreen lotion, wide brim hats, magnifiers, …) to a human rights based approach should probably be understood as part of an international shift towards a discourse centered on human rights. This is also connected to the fact that TAS, just like all the other DPOs in Tanzania, has been highly dependent on international funding. Especially since the rise of neoliberalism and the era of structural adjustment programs in the 1980s, DPOs in Tanzania had to connect to international agencies for funding and support. The first structural adjustment programs in Tanzania were introduced after Nyerere’s presidency in 1985, when socialist policies gave way to a more liberal course. In talking with TAS and other DPOs, they all contended that government support declined after Nyerere and eventually stopped, forcing them to seek funding from other places. Consequently, studying the history of TAS also means studying the broader history of international development in Tanzania, and for example the important role of an agency like NORAD (the Norwegian Agency for Development Cooperation) in funding organizations like TAS.

This short venture into some of the historical aspects of albinism in Tanzania reminds us about the cultural contingency of disability that we need to take into account when writing histories of disability. Yet at the same time, it warns us not to lapse into models that analyze these histories as self-contained ‘local’ or ‘African’ histories. The history of disability in Tanzania is firmly entrenched in global processes like colonialism, the global spread of capitalism or international development interventions. Researching the history of disability in Tanzania, also means looking at how people with disabilities and their DPOs engaged with these international developments. Only then can we come to a full understanding of what it means to celebrate the International Day of Persons with Disabilities in Dar es Salaam anno 2016.

The documentary ‘In the Shadow of the Sun’ follows Tanzanian activist Josephat Torner, who is Tanzania’s most famous campaigner against the discrimination of people with albinism.

Recommended Citation:
Sam De Schutter (2017): How albinism rose to the center stage of disability advocacy in Tanzania (and what this tells us about ‘local’ histories of disability). In: Public Disability History 2 (2017) 6.

[1] This day has been called into existence by the United Nations in 1992 and has since ‘been celebrated annually on 3 December around the world’ (see http://www.un.org/en/events/disabilitiesday/)
[2] See Bryceson, D., Jønsson, J., & Sherrington, R. (2010). Miners' magic: Artisanal mining, the albino fetish and murder in Tanzania. The Journal of Modern African Studies, 48 (3), 353-382. doi:10.1017/S0022278X10000303.